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What is Fistula?

The profound social isolation is worse than the physical tormant. Lucian Read/ UNFPA

Fistula is a childbirth injury caused by prolonged obstructed labor.

Without treatment, fistula often leads to social, physical, emotional and economic decline. Although some women with fistula display amazing courage and resilience, many others succumb to illness and despair.

The misery of fistula is relentless. In spite of one's best efforts to stay clean, the smell of leaking urine or faeces is hard to eliminate and difficult to ignore. The dampness causes rashes and infections. The cleaning up is constant, and pain or discomfort may be continuous as well. The grief of losing a child and becoming disabled exacerbates the pain. The courage many women show in the face of these challenges is extraordinary.

The injury leaves women with few opportunities to earn a living, and many have to rely on others to survive, or turn to begging or commercial sex. In some communities they are not allowed to have anything to do with food preparation and may be excluded from prayer or other religious observances. Although many women with fistula have supportive families, the smell can drive even loving husbands and friends away. For many women, the profound social isolation is worse than the physical torment.

The pain and loneliness associated with fistula is often compounded by a sense of shame and humiliation. In some communities, the condition is seen as a punishment or a curse for an assumed wrongdoing, rather than as a medical condition.

The stigma associated with the condition keeps many women hidden away. Some go into deep physical and emotional decline and may resort to suicide. And because so many women with fistula remain marginalized and out of sight, many policy makers—and even some health providers—have failed to recognize the scope and severity of the tragedy.

Q&A

Obstetric fistula—a hole between the bladder and the vagina or the rectum, or both—is a childbirth injury caused by prolonged, obstructed labour, without timely medical intervention; typically, a Caesarean section. The baby almost always dies during labour.

During unassisted prolonged labour, the sustained pressure of the baby’s head on the mother’s pelvic bone damages her soft tissues, creating a hole—or fistula—between the vagina and the bladder and/or rectum. The pressure prevents blood flow to the tissue, leading to necrosis.

Eventually, the dead tissue sloughs off, damaging the original structure of the vagina. The result is a constant leaking of urine and/or feces through the vagina.

Fistula occurs when emergency obstetric care is unavailable to women who develop complications during childbirth. This is why women living in remote rural areas with little access to medical care are mostly at risk.

Before medical advancements, fistula was quite common in Europe and the United States. Today, it is almost unheard of in high-income countries, or in countries where obstetric care is widely available.

Poverty, malnutrition, poor health services, early childbearing and gender discrimination are interlinked root causes of obstetric fistula. Poverty is the main social risk factor because it is associated with early marriage and malnutrition, and it reduces a woman's chances of getting timely obstetric care.

In addition, because of gender inequality in many communities, women do not have the power to choose when to start bearing children or where to give birth.

Childbearing before the pelvis is fully developed, as well as malnutrition, small stature and generally poor health conditions, are contributing physiological factors to obstructed labour. However, older women who have already had babies are at risk as well.

Fistulas, or holes in organs, can occur for various reasons in different parts of the body, such as the lungs or digestive tract. Tissue damage resulting from prolonged obstetric labour and resulting in incontinence is called obstetric fistula. Tissue damage between the bladder and vagina is called vesicovaginal fistula. While tissue damage between the rectum and vagina is called rectovaginal fistula. Most times, if the rectum sustains a fistula, the bladder will also have been damaged resulting in the leakage of both urine and faeces.

The vaginal canal can also be ruptured by violent rape. In 2003, thousands of women in eastern Congo presented themselves for treatment of traumatic fistula caused by systematic, violent gang rape that occurred during the country's five years of war. So many cases have been reported that the destruction of the vagina is considered a war injury and recorded by doctors as a crime of combat.

Fistula is most common in poor communities in sub-Saharan Africa and Asia where access to obstetric care is limited. About two million women remain untreated in developing countries and between 50,000 and 100,000 new cases occur each year. But good data on fistula prevalence is scarce. Needs assessments conducted as part of the Campaign to End Fistula suggest that these figures could be higher.

Fistula is a relatively hidden problem, largely because it affects the most marginalized members of society: young, poor, illiterate women in remote areas. Many never present themselves for treatment. Because of the shame and stigma associated with the condition, they often chose to suffer alone, remaining ignored. The Campaign to End Fistula is working to break the silence around this condition and the stigma attached to it.

Prevention, rather than treatment, is the key to ending fistula. Making family planning available to all those who desire it would considerably reduce maternal deaths and disabilities. Complementing that with skilled birth attendance and emergency obstetric care for women who may develop complications during delivery would reduce the rate of fistula in developing countries.

These interventions are part of UNFPA and partners overall strategy in the Campaign to End Fistula and ensure safe motherhood. Addressing social issues that contribute to the problem—such as early pregnancy, girls illiteracy, poverty and women's lack of power—is also important to help prevent fistula from occurring in the first place.

Yes, fistula is treatable as well as preventable. Reconstructive surgery can, in most cases, mend the injury. Two weeks or more of post-operative care are needed to ensure a successful outcome. Counselling and support are also important to address emotional damage and facilitate social reintegration. The average cost of fistula treatment —including surgery, post-operative care and rehabilitation support— is around $400.

Sadly, most women living with fistula are either unaware that treatment is available or they cannot afford it. In addition, treatment capacity, in most areas where fistula is common, cannot meet the demand due to high number of patients.

As with any surgery, fistula repair does carry some risk. Possible complications after a fistula surgery includes infection, urinary problems and breakdown of repair, most of which can be effectively managed. Only in rare cases do patients die.

The documented fatality rate for fistula surgery ranges from 0.5 to 1 per cent in sub-Saharan Africa. Careful screening and management before surgery is vital, as women with fistula tend to be malnourished and more susceptible to diseases. Post-operative care and close long-term follow-up is needed in managing both the surgical and medical problems that may occur.

If left untreated, fistula can lead to frequent ulcerations and infections, kidney diseases, and sometimes death. Some women drink minimally to avoid leakages. As a result, they become dehydrated. In addition, damage to the nerves in the legs leaves fistula patients unable to walk, creating the need for extensive physical rehabilitation.

These medical consequences, coupled with social and economic problems, often contribute to a general decline in the health and well-being of fistula patients, resulting in early death, sometimes by suicide. However, many women with fistula are strong—as demonstrated by their surviving prolonged, traumatic labour—and they can live a long time. Some women have lived with the condition for 40 years or more.

Female genital mutilation or cutting (FGM) is condemned by most governments because of its potentially devastating consequences, both during or directly following the procedure and subsequently, for women’s sexual and reproductive health. UNFPA is committed to helping end this practice.

Due to several contributing factors, FGM is commonly found in many of the contexts where obstetric fistula is also prevalent. FGM can lead to serious difficulties during childbirth. With significant risks of hemorrhage (bleeding) for the mother, FGM can also lead to the increased risk of death or the need for resuscitation of the newborn.

Evidence shows that while some types of FGM do not contribute to the development of obstetric fistula, the radical form, also called infibulation (the stitching up of the vagina), may prolong the expulsion phase during delivery, especially if significant scarring is present.

However, there is insufficient evidence to conclusively show that it contributes to obstructed labour or obstetric fistula. It is known that a woman with radical FGM is at increased risk of traumatic fistula from having her genitalia cut open during labour, to allow the birth of the baby.

It is important to recognize that a traumatic fistula is not at all the same as a classic obstetric fistula, which is caused directly by unrelieved obstructed labour.

In 2003, UNFPA and its partners launched the first-ever global Campaign to End Fistula. Its overall goal is to eliminate fistula as a public health issue in developing countries as it already happened in developed countries.

The Campaign promotes interventions to:

Prevent fistula from occurring;

Treat women who are effected;

Renew the hopes and dreams of those who suffer from the condition.

The campaign's approach includes bringing the issue of fistula to the attention of policy-makers and communities, sensitizing the general public to reduce the stigma associated with it, and helping women who have undergone treatment live their normal lives again.

The Campaign is present in more than 50 countries across sub-Saharan Africa, Asia, the Arab region and Latin America. In each country, the Campaign functions in three phases:

First, a needs assessment is carried out to determine the extent of the problem and the avaliable resources to treat fistula in that area;

Second, each country that completes the needs assessment phase receives financial support for planning, raising awareness, developing appropriate national strategies and building capacity;

Third, a multi-year implementation phase begins, with interventions to prevent and treat fistula. Activities include improving obstetric care, training health providers, creating or expanding and equipping fistula treatment centres, as well as helping women reintegrate into their communities.

Since the Campaign to End Fistula was launched, at least 38 countries have completed a situation analysis concerning fistula prevention and treatment.

Over 30 countries have integrated fistula into relevant national policies and plans. Many countries have shown increased national engagement on the issue &ndash; with governmental funding and support provided to support programmatic efforts.

The majority of Campaign countries are now in full implementation phase (along the three phased Campaign process of needs assessment, national strategy and implementation)—a shift that illustrates the momentum and demand gathering at country level.

Thousands of health personnel, including doctors, nurses, midwives and paramedical staff, have received training in fistula treatment and care thereby increasing national capacity to address the issue.

More than 57,000 women have received fistula treatment and care with direct support from UNFPA.

In response to an external evaluation of the Campaign in 2009/2010, UNFPA developed an Orientation Note for obstetric fistula in 2011 that builds on previous work and provides a vision for the future. This includes a focus on national programming and sustainability; a gradual programmatic shift from fistula camps/campaigns to ongoing and integrated holistic fistula services in strategically selected hospitals; and strategies to ensure the survival of the woman and child and to prevent a new fistula from occurring in the subsequent pregnancies of women who have received fistula surgery.

More than eighteen Campaign countries are working with fistula survivors to sensitize communities, provide peer support and advocate for improved maternal health at both the community and national levels. The work of fistula survivors has expanded both in the number of countries working in this area and the level of engagement of the survivors, particularly as fistula prevention and safe motherhood advocates;

Together with Campaign partners Direct Relief International and Fistula Foundation, UNFPA helped to initiate the largest and most comprehensive map of available services for women living with obstetric fistula. The Global Fistula Care Map was launched in early 2012, highlighting over 150 health facilities providing fistula repair surgeries in 40 countries across sub-Saharan Africa, Asia and the Arab States. The map is a major step forward in understanding the landscape of worldwide treatment capacity and service gaps for obstetric fistula; it will also help streamline the allocation of resources. It will be expanded and continuously updated with information provided by experts and practitioners from around the globe about fistula repair and rehabilitation services.

In collaboration with key partners, the Campaign to End Fistula has developed tools and guidance to support countries in their work to address fistula. Such tools include the internationally standardized obstetric fistula competency-based training manual, the outreach guidance for planning and executing an outreach treatment campaign, a costing tool to assess real costs of pre, post and operative care, and others; and

Advocacy and awareness raising efforts have been targeted at a variety of audiences in both developed as well as developing countries, including policy makers, health professionals, media, and the public in general, also contributing to resource mobilization for fistula programmes both within and outside of UNFPA.

UNFPA's long involvement in programmes to reduce maternal mortality and morbidity makes the Fund uniquely qualified to tackle the challenge of fistula. Moreover, fistula touches on nearly every aspect of UNFPA's mandate, including reproductive health and rights, gender equality and empowerment, and adolescent reproductive health.

Because of the factors that contribute directly and indirectly to fistula, addressing this issue can serve as an entry point for overall improvements in women& reproductive health and rights. At the same time, fistula is a window allowing UNFPA to see where reproductive health services are failing to safeguard women health, especially for the poorest and most vulnerable members of society.

About

Obstetric fistula is a hole in the birth canal caused by prolonged labour without prompt medical intervention, usually a Caesarean section. The woman is left with chronic incontinence and in most cases a stillborn baby.

The smell of leaking urine, faeces or both, is constant and humiliating, often driving the patients' family, friends and neighbors away. If left untreated, fistula can lead to chronic medical problems including ulcerations, kidney disease, and nerve damage in the legs.

Surgery can normally repair the injury. The average cost of fistula treatment and post-operative care is $400. Sadly, most women with the condition do not know that treatment is available, and most times they cannot afford it.

Like maternal mortality, fistula is almost entirely preventable. But at least 2 million women in Africa, Asia, the Arab region and Latin America are living with the condition, with about 50,000 to 100,000 new cases each year. The persistence of fistula signals that health systems are failing to meet the needs of women.

Obstetric fistula occurs most often among impoverished girls and women, especially those living in regions without adequate medical services. Affecting the most powerless members of society, it touches issues related to reproductive health and rights, gender equality, poverty and adolescent reproductive health.

That is why, in 2003, UNFPA and its partners launched the global Campaign to End Fistula, a collaborative initiative to prevent fistula and restore the health and dignity of those affected by the condition.

Fast Facts

Obstetric fistula is preventable and treatable.

Fistula has virtually been eliminated in Europe and North America through improved obstetric care.

Women in sub-Saharan Africa suffer almost twice as much illness from sexual and reproductive health causes than women in the whole world.

At least two million women live with fistula in developing countries, with 50,000 to 100,000 new cases occurring each year. These figures are based only on the number of women who seek treatment.

In areas with high maternal mortality, fistula may occur at a rate of two to three cases per 1,000 pregnancies.

About 15 per cent of all pregnancies result in complications that require emergency medical intervention.

Only 58 per cent of women in developing countries deliver with the assistance of a professional (a midwife or doctor) and only 40 per cent give birth in a hospital or health centre.

The average cost of fistula treatment—including surgery, post-operative care and rehabilitation support—is $400, which is well beyond the reach of most women with the condition.

However, after treatment former fistula patients can have a normal life again.

Prevention is the key to ending fistula.

The Campaign to End Fistula, launched by UNFPA and partners in 2003, is now present in more than 50 countries across Africa, Asia, the Arab region and Latin America.

Key strategies to address fistula:

Provide access to adequate medical care for all pregnant women.

Provide emergency obstetric care for those who develop complications.

Increase access to education and family planning services for women and men.

Postpone pregnancy for young girls until they are physically mature.

Improve girls' nutrition to minimize the risk of complications during childbirth.